Tim is going to gain about 10lbs while I am gone with all of the wonderful meals delivered to him this weekend from friends and family. This does not help make me look like a great wife in the meal dept. ;) All joking aside, we are BEYOND thankful for this support and help! I have been consumed with trying to pack for an unknown period of time. How does that work, you ask? Good question. I am packed for a 10 day stay. If i am there longer b/c we find out the single stage surgery is a must, then Tim will drive our van out here loaded to the gild for the surgery and fly home once we are re-settled post surgery. That is our plan B. We went on a date night Saturday to dig ourselves out of denial a little bit and come up with a plan B. We don't want to be blindsided. My mom will fly out to be with me the rest of our stay if I am in Cincy awhile. Thank GOD for my wonderful mom! I would be lost without my folks!
I feel like a broken record when people ask what this trip is for and I am hate boring people with details but it feels good to have friends/family care and ask. I can barely keep up with the details so i can't imagine everyone else remembering each trip and the course of action that will take place. I apologize if i am repeating myself again **Skip if you are bored LOL** Preston and I will arrive in Cincy tomorrow around 1pm. We will check into the RMH house and get settled. I plan to take him on a long walk by the hospital and a park to get fresh air. Not sure how nap time will work out tomorrow so this can be his 'chill time' and then we will eat dinner at RMH. I am hoping to see some of our friends who are currently there till the end of the year (yes, the end of the year- we are SO grateful to be able to come back home after each trip). His O.R. time isn't till 4pm on Wednesday (poor guy has to be NPO all day :( and we need to arrive by 2pm at the hospital at pre-op. So we are heading to the ZOO all morning. Its right down the street from RMHouse and will be a great distraction from not being able to eat all day. Once we get to the hospital on Wednesday, Preston will be inpatient the ENTIRE time we are there. Not looking forward to that. So as much fresh air that we can get the better!
Preston's scope on Wednesday will tell us the next plan of action. He will either be a guinea pig for the following few days with trying to downsize his trach and drill a hole in (called a fenestrated trach) and keep him hooked up to monitors to see how his O2 sats are and if all goes well, we will go home with orders for capping trials and wean him off the use of his trach for the following 4-5 months. Then once he is capped daily and nightly, he will get it out. OR he will be having the single stage LTR on Sept 10th and Dr Rutter will take rib cartilage to build a new graft to repair his airway 100%, trach comes out for good, intubation tube stays in for a week (he will be sedated for that period of time as to not move or jerk the tube in any way causing the graft to be displaced). Then we have to stay put in Cincy for 4-6 weeks with a weekly scope to see how he is healing. Both scenarios have major perks and drawbacks. I can't decide which one is what I should be praying for. So my prayer has been whatever is BEST for PRESTON, least amount of pain, and most successful long-term future for him and his airway! For the first time ever, I can visualize what my little man's neck is going to look like naked. When that will be is up to his little body and Gods plan!
I will be updating the blog nightly (the best therapy ever and to keep everyone informed). Our prayer warrior friends and family have kept me feeling at peace over this trip and the outcome. Leaving Reid behind and missing Tim nightly is what tugs at my heart the most. I just HATE leaving my Reidy Roo for more than a few nights here and there. I will miss being with Jessica each day and taking the boys to the park in the morning or going to story time together. Those things will be waiting for us when we get home…….trach free or a plan to be trach free SOON!
Thank you for all of your well wishes, prayers, and word of encouragement! They mean so much to us!